Cancer. We all know someone, somewhere, afflicted by it.
The statistics tell us that 1 in 7 women will be diagnosed with breast cancer in their lifetime, and 1 in 6 men will get prostate cancer.
And that lung cancer is the leading cause of cancer-related death in Australia.
There are so many different tumour types, stages, grades, mitotic rates and variations.
Some people get an early-stage, curable cancer, whilst others develop end-stage terminal cancer.
There is no one cancer diagnosis exactly the same.
And there is no one story identical.
The research, online information, facts and statistics relating to cancer are infinite, but what is it really like to get a cancer diagnosis?
Regardless if the diagnosis is early-stage or advanced, it is a cancer diagnosis for the individual.
And that’s terrifying for most people.
How someone reacts to this news is personal.
Some are stoic and determined, whilst others are in denial, and some simply fall to pieces.
It is determinate by the type of cancer someone has been diagnosed with as to the type of treatment they will receive.
And whilst some patients will resolutely follow their oncologist’s treatment plan without question, others disappear down a rabbit hole researching and reading everything possible.
And some even opt for no treatment at all, or decide on alternative therapies.
Whatever choice someone considers, it’s advisable to always get advice from a qualified medical oncologist first.
I think someone who has conquered something like cancer has a certain type of swagger that others don’t. An inner strength that says “I ain’t afraid of shit”
– Eric Leary (cancer survivor)
My Breast Cancer Diagnosis
I fell into the stoic category when I was diagnosed with breast cancer at 41 years old.
I wasn’t in denial. Quite the opposite.
You see, I always knew that I would get cancer.
I always had this innate feeling for as long as I could remember. It was weird. And people thought I was weird when I said it out loud.
But it came as no shock when I heard the words “you have cancer” and I dealt with it very pragmatically.
I was diagnosed with Grade 2 Invasive Lobular Breast Cancer, hormone-positive, HER2 negative, with 2 of 17 positive lymph nodes.
And, I was guilty of disappearing into the World Wide Web.
I researched and read anything and everything about breast cancer from types of surgeries, to treatment options, and lifestyle changes, but always coming back to the why.
Never out loud. Only in my mind, but I did wonder why me.
I always had had this persistent feeling that I’d get cancer, I didn’t know why that was.
I did search and I found nothing to indicate that my risks were greater than anyone else’s. Or that my lifestyle choices were to blame.
I was slightly overweight. I enjoyed my wine a little too much. My diet wasn’t fantastic but it certainly wasn’t unhealthy. I had a family history of cancer but not that significant to qualify for genetic testing.
So I chalked it up to bad luck and proceeded with a double mastectomy, six months of chemotherapy and eventually bilateral reconstruction.
Chemotherapy sucked, there is no sugar-coating it.
But honestly, it wasn’t as bad as what I was expecting, as I had heard so many horror stories.
I underwent 6 rounds of docetaxel, doxorubicin and cyclophosphamide.
My hair fell out in between rounds 1 and 2, but it didn’t worry me greatly.
I preferred my ‘bald’ look to wearing a wig or scarf. But that is a personal choice as I know some ladies are horrified at losing their crowning glory.
Honestly, truth be told, I was more devastated to lose my eyebrows!
I lost them after my last chemo session, and it was bloody awful. I did not appreciate my eyebrows until I had none.
I didn’t need radiotherapy as I had had a mastectomy.
But, if opting for a wide local excision or lumpectomy, with positive lymph nodes, then radiation would have been recommended.
Yes, they are FAKE- the real ones tried to KILL me
Eventually, I decided to undergo bilateral reconstruction four years after my initial diagnosis.
I have summarised this to keep it concise, but in fact I had my left breast off first, leaving me with one boob swinging in the breeze until I decided to have a prophylactic right mastectomy 12 months later.
I actually didn’t mind having a flat chest wall. It was quite liberating, even though it wasn’t flattering at times, and did restrict clothing choices.
I think being without breasts for four years actually made me appreciate my reconstruction even more.
I loved my new boobs, scars and all.
And I loved having shape again and being able to wear clothes that made me feel feminine.
This is my personal view, as I am very aware not having boobs does not detract from one’s femininity.
Life After Cancer
For me, life did eventually return to normal. But it was never the same as my old reality.
I had been through something life-altering and that changes everything.
Plus, you never truly forget. There is always that nagging doubt in the back of your mind that the cancer will return.
And when you look in the mirror there is that constant reminder.
But even though my reflection serves as a reminder of what I’ve been through, I embrace it positively as it reminds me that I overcome and beat what tried to defeat me.
I’m comfortable and confident with my scars, and more than happy with my breast reconstruction.
I may not have nipples, but I don’t have to ever worry about being on high beam when cold again.
And the very best thing is I have not worn a bra in over nine years!
Five years post-diagnosis my Oncologist bought up genetic testing again, as I had three daughters, all in their early to mid twenties.
I had initially consulted with a geneticist back in the early days of my diagnosis. But I didn’t qualify for free testing due to insufficient family history.
I could have paid for the test, but at that time my daughters weren’t interested so I didn’t pursue it any further.
Now the test was included on the MBS (Medicare Benefits Scheme). So I went ahead and got tested without giving it much more thought, until the results came back.
What the hell is a CDH1 mutation
My results returned a conclusive result for Pathogenic Variant DETECTED: CDH1:c.2100deIT
What the eff … what in the hell did that mean!
What it meant was that I had a super rare genetic mutation that affected only 1% of the population.
This meant that I was at greater risk of both “Invasive Lobular Breast Cancer” (check) and “Hereditary Diffuse Gastric Cancer” (uncheck).
“a positive test result for a CDH1 gene variant means that a pathogenic (disease-causing) variant has been found. This result means that a person has HDGC Syndrome. This means that a person is at higher risk of developing hereditary diffuse gastric cancer (HDGC) and/or lobular breast cancer (ILC)“.
What are the estimated cancer risks associated with HDGC Syndrome?
Not everyone who inherits a gene mutation for HDGC will develop cancer.
In people who have a mutation in the CDH1 gene, the lifetime risk for diffuse gastric cancer is estimated to be up to 70% for men and 83% for women by age 80.
Women with a mutation in the CDH1 gene also have a 30% to 70% risk of developing lobular breast cancer by age 80.
What’s the Treatment Plan for HDGC Syndrome?
Individuals with a germline CDH1 mutation should consider having their stomach surgically removed, also known as prophylactic total gastrectomy.
This type of surgery is the only proven effective way to prevent diffuse gastric cancer in individuals with HDGC.
There is no other effective surveillance method due to the diffuse nature of the cancer (think tiny grains of sands instead of a solid tumour).
Women at risk for HDGC are also at high risk for Lobular Breast Cancer.
Lobular Breast Cancer forms in the breast lobules, unlike the more common ductal breast carcinoma which forms in the milk ducts.
This makes surveillance more difficult.
Recommended screening options include:
- Monthly breast self-examinations
- Clinical breast examinations every 6 months
- Regular breast imaging with mammograms, ultrasound and/or breast MRI
Since lobular breast cancer can be difficult to detect with a mammogram, breast MRI is recommended for breast cancer screening for women with a CDH1 mutation.
Surgical removal of the breasts, called prophylactic mastectomy, is also sometimes recommended to reduce a woman’s risk of breast cancer.
Family Jig-Saw Puzzle
Ok, so I now had all the facts, statistics and treatment recommendations but what did this mean for my family, especially my children.
In short, there is a 50/50 chance of a CDH1 mutation being passed on from parent to child.
So my parents, sibling and three daughters all lined up for genetic testing.
Firstly, my dad tested positive which solved the puzzle of which of my parents had passed the mutation to me.
My eldest and youngest daughters were tested next, and both returned negative results.
This was a huge relief as both had children of their own, which meant that there was no risk of my grandchildren carrying this cancer-causing mutation.
But, unfortunately, my middle daughter tested positive.
And like me, the recommendation was for her to have a total gastrectomy (complete removal of the stomach).
Seahorse ~ one of the few creatures on earth with no stomach.
And now both my daughter and I were part of this elite society.
We both proceeded with our total prophylactic gasterectomies as per recommended treatment protocol.
My pathology came back positive for signet ring cell carcinoma in-situ with no invasive malignancy.
This was a shock but reassured me that I’d made the right decision to get my stomach removed.
However, my daughter, at 25 years old, tested positive for invasive hereditary diffuse gastric cancer, characterised by signet ring cell carcinoma (SRCC).
Her histopathology showed multiple foci of SRCC which had invaded the superficial lamina propria.
In the words of her surgeon, her “stomach was riddled with cancer”.
Knowledge is Power
Knowledge is power, and genetic testing saves lives!
We were both testimony of that, especially my daughter.
My daughter did not have to have any adjuvant treatment such as chemotherapy or radiation.
As the cancer had not spread into the serosa membrane of her stomach, the total gastrectomy was considered her first-line treatment.
And, my innate feeling that I’d get cancer turned out to be correct!
It was built into my DNA from conception.
I was fated to get cancer before I was even born.
No Stomach, No Problem
When I was first diagnosed with breast cancer nine years ago I got lost searching online for real stories about other breast cancer patients.
But all I found was site after site of clinical information, statistics and research.
My aim is to hopefully provide an insight into what it’s like to navigate a cancer diagnosis from a personal perspective.
And to give others comfort in knowing that there is hope, and light at the end of a very, long and sometimes dark tunnel.
And whilst it’s important to read the research and heed the doctors’ and clinical teams’ advice, unless they have been through a cancer diagnosis personally, no one can really tell you what to expect.
Life can return to normal after a cancer diagnosis, albeit for my daughter and I, we’ve had to find our “new normal” adjusting to life without a stomach.